Bringing Out The Strength In Others In Combating Rare Diseases With Effie Parks

The Virtual Campfire with Tony Martignetti · Apr 14, 2021 · 36m

Catching and combating rare diseases, particularly those connected with genes, are huge personal battles that are truly hard to win. But how much more difficult is it for the people watching from the sidelines? Tony Martignetti sits down with Effie Parks, who shares her own struggle as a mom who fought hard for her child diagnosed with the rare CTNNB1 syndrome – an experience that taught her how to persevere amid the many medical hardships. She talks about how her pursuit for support and inspiration from other people gave birth to the Once Upon a Gene show, which evolved into advocacy of her…